Bright spots amidst a tough recovery

Hi, friends. Surgery was 5 weeks ago, and I'm doing ok! It has been my most challenging recovery yet, but I'm finally feeling like things are getting better each day. The worst part was a partial small bowel obstruction at the end of November. It was excruciating, comparable to the worst pain from childbirth contractions. Apparently they are relatively common after surgeries like mine, especially 2-3 weeks post op when there is the most scar tissue. I also had a higher risk because of the radiation on my pelvis before surgery. Anyway, the obstruction lasted about 12 hrs and thankfully cleared on its own. Since then I've mainly had liquids, soups, smoothies, and some food but have to be really careful. It's frustrating, but I'm relieved that overall my abdomen, muscles, and incision are healing pretty well. 

I saw my doctors the morning the obstruction cleared and learned that the large tumor they removed was 95% necrotic. That means it was mostly dead! Radiation breaks up double stranded DNA, and fortunately the cancer cells weren't able to repair it. We're hoping that radiation also zapped any smaller growths that could have been in my pelvis. It is astounding to me that my bladder and bowels got the same dose of radiation as the tumor, and they are still functioning! When I get frustrated about my current diet limitations I feel grateful things are working at all. 

It is discouraging that my surgeon found a 2 cm mass in my abdomen near my belly button (hadn't been detected on the scans, which happens sometimes). This was outside the area that was radiated, but Dr Grignol felt good about the margins, so we'll take it. I'm relieved she found it, after going through each inch of my small intestines!

Moving forward, I start a new treatment this Wed. It's a chemo pill and a parp inhibitor. The goal is to break up DNA and then make it difficult for the cells to repair. A major side effect is low white blood cell counts (which is immunocompromising), nausea, and fatigue. I'll get scans in the new year to see if anything has popped up after surgery, and then more scans after I've been on the treatment for a few cycles to see how things look. 

Other LMS survivors talk a lot about "scanxiety," the severe anxiety leading up to scans. I get nervous about them but also do my best to enjoy all the days leading up to them, before we know whether or not there is a recurrence. So we're really looking forward to Christmas and New Year's. 

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I've had tons of help during this recovery. Janice and Mike brought food and helped with the kids and me whenever needed. We are so grateful they uprooted their lives in Maryland and now live 20 minutes from us. Amy came when I got home from the hospital and served as my stunt double by cuddling with my kids when I couldn't. My mom made us lots of good food and helped organize the kids' toys. Elissa was a major lifesaver, taking me to the ER when Liam was too sick with a cold (we look shockingly good by the hospital Xmas tree after being up all night!) 

The Hockleys came for Thanksgiving, and we had a blast. 

 

Then we got to party for Liam's birthday. And now we're gearing up for Christmas! This will be our first Christmas in our house because we've always travelled to MD, so the girls are super excited about decorating, though Nora was not feeling the Santa visit. 😂 The girls are also loving gymnastics these days. 

We were making a list for Santa and I asked Nora, is there anything else you want? 

Nora: toys.

Me: what kind of toys?

Nora: a lot of toys. 

Sending love, hugs, and appreciation to all of you. 

P.S. My hair is growing in, but it's rather poofy. Liam has decided it looks like our favorite Italian philosopher, Antonio Gramsci. 😆 I just need some of those spectacles.